Linda's Story

"The threat to my dignity came from the hospital’s culture."

Dignity in healthcare is all the rage. Numerous charters and laws place healthcare providers under an obligation to treat patients with dignity and respect. The fabulously popular movement for ‘patient-centred care’ claims that respecting patient dignity lies at its core.

None of these documents tell us what it means to treat a patient with dignity. If we don’t know what it is, how can we know whether it’s being respected?

In my three-month experience as an in-patient in a public hospital, we still have a long way to go. Acute leukemia kills fast. I was on a hospital ward not more than five minutes after being told of the diagnosis in an outpatient’s clinic. A few hours later the chemotherapy was running. I can’t be more grateful to this public hospital for its devotion to trying to save my life. What I struggle to be grateful for is what happened over the next few days.

It went something like this.

Day one, me, curled up in foetal position, behind my curtain, crying. Curtain pulled aside: “Hi Linda, I’m a dietician student from X university. I wanted to talk to you about your eating and have a feel of your face muscles”.

Me, being spooned by my husband, both of us crying, curtain pulled aside: “Hi Linda, I’m one of the physiotherapists. I want to talk to you about our exercise programs. I can come back later if you like”.

Me, seeing my kids for the first time, trying to explain what was happening, curtain pulled aside: “Hi. I’m from kitchen services. Can I get you to fill in your meal preferences? I’ll just go through the menu options for you”.

Me, trying to get into my clothes through all the tubes, crying again, curtain pulled aside: “Hi Linda. I’m from pastoral care”. Me, more savvy now: “No, thank you, but I don’t need your services”. Her: “I’ll just sit down for a little talk, just so you know what we can offer”.

Me, under siege, curtain pulled aside: “Hi Linda, I’m from the social work department. I just wanted to talk to you about the kinds of services we can offer”.

Me, vomiting as quietly as I can into a plastic bag, loud voice outside the curtain: “Volunteers here. Do you want a newspaper or lollies? Me, ignore them, they’ll go away. They don’t go away. Annoyed shouting: “I said, do you want a newspaper or lollies?!”

Me, asleep, eye mask and earplugs, husband guarding the curtain, curtain pulled back: “Hi, I’m from organization X (a cancer support charity). I’d really like to talk to Linda”. Husband: “What Linda needs is for people to respect her privacy and give her some peace. She knows that chicken and eggs are high in protein, and that walking around is good for her. We’re on top of accommodation, finances and superannuation. She really doesn’t like getting her feet massaged or talking to complete strangers about her ‘spiritual concerns’. Seriously, we’re good here”. Person from cancer charity: “That’s so great that you are able to offer this kind of support to your wife”, and then sits down to inform my husband of all the other ways he can support me. Husband exercises miraculous self-control.

This is just the tip of the iceberg. Meals are delivered and rooms cleaned multiple times a day, equipment is checked, water jugs are replaced, and other things besides. And anyone who has ever spent time in a shared ward knows all about the crushing noise – the TVs that blare all day, the groups of exuberant visitors who stay well after visiting hours, the patients who spend hours yelling into their mobile phones, unaware that they are remarkably good at transmitting sound over long distances.

It’s hard to convey the impact of these intrusions on a sick person in a state of shock, and how much worse everything becomes with extreme rest deprivation. But the more serious harm is the loss of dignity.

Sick people in institutions lose some of the social status that is the privilege of being an adult. They no longer enjoy a sphere of personal control normally taken for granted. Once they enter a hospital, sick people occupy only public space, and become a type of public object. Dozens and dozens of people receive institutional endorsement to encroach on a person’s privacy in ways that would be considered outrageous in almost any other setting (excepting perhaps prisons and immigration detention centres).

For patients, just as with small children, it is assumed that others know much more than they do about what might be good for them, and the moral imperative to supply it justifies hurling all social conventions about control over personal space right out the window. Even the cleaning lady who berated me for going downstairs for a coffee and who tried to shepherd me back into bed considered herself entitled to act as the CEO of my well-being. For an adult, this is a serious loss of dignity.

And yet, if dignity were taken seriously, very simply solutions could be adopted. Nurses consider themselves their patients’ advocates – they should be their gatekeepers as well. They could inform allied health professionals if their services were needed, having first discussed the options with their patients. Cleaners and meal-deliverers could come back when curtains are open, or leave trays outside a closed curtain, or at least wait for permission before flinging a curtain aside. Mandatory use of headpieces, and the request that all but the bedridden take their phone calls in a common room would also go a long way.

Unless dignity counts for nothing, inconvenience to hospital staff shouldn’t count as an automatic trump card. Consider another case: we no longer think that the significant burdens associated with informed consent means that doctors shouldn’t have to obtain it (although we used to think this).

As with early resistance to informed consent, I doubt the barriers are only inconvenience, or cost. The problem is our enduring cultural mindset about what it means to be a patient. The demand for informed consent chipped away at the assumption that doctors are the benevolent masters of their patients. With respect to the way hospitals are run, the issue of mastery clearly hasn’t been resolved.

My attempts to exert some control over the 4 square metre space around my bed were met with bafflement and sometimes hostility. I was perceived as either being confused about what is expected of a patient, or as being ungrateful. But it is essential to our status as adults that we exercise some control over intimate spaces and over highly personal interactions with others, especially strangers. Some people will choose to leave curtains and doors wide open at all times, welcoming visits from any and all who might wish to offer their services. That too is an exercise in control.

As patients we contribute to this cultural take on the diminished role of patient. When a reasonably well and mobile patient chooses to spend day after day lying around in his pyjamas, or addresses the doctor as ‘doctor’ (rather than ‘Mary’ or ‘Michael’), he presents himself as less capable and in control than he is. So does a patient who never asks the questions she really wants answered, but just hopes ‘doctor’ will volunteer the information, and then complains to other patients when he doesn’t. That too is child-like. Patients are also plagued by stereotypes about how they are supposed to behave.

In Being Mortal, Atul Gawande writes movingly about even greater harms in nursing homes. In the name of ‘care’ or ‘safety’, residents in full possession of their cognitive marbles are often stripped of all vestiges of control: others decide when they sleep, when they eat, which ‘safe’ activities they are permitted to engage in, and in some cases even when they toilet or shower. I bet they don’t get to lock their doors or keep their curtains closed either.

In all of the demands to respect patient dignity, including in the movement for patient-centred care, the fixation tends to be on the administering of medicine. In my own experience, the administering of medicine never threatened my dignity. The doctors and nurses were astoundingly good. The threat to my dignity, and after time to my sanity as well, came from the hospital’s culture. It made me wonder if the real catch-phrase we need is not ‘patient-centred care’, but ‘patient-centred institutions’.

Rob's Story

"Sensitive Hospital Culture"

(Rob's best friend Roger had been admitted to ICU some days before his death. Family and friend's, including his wife and three young sons, had been able to spend time with Roger prior to his death. At Roger's wife Ingrid's request Rob and Roger's sister Ally gave Roger his final wash.)

I was very conscious. Roger’s sister Ally and I were very conscious of how valuable this room was. This was a single bed unit, in intensive care and it can’t be allowed to sit idle. And yet there was absolutely no pressure on us to move on or “could you hurry up” or “I can give it to you for an hour” or something. Indeed the exact opposite was the case. Now this, to both Ally and me was a considerable concession on behalf of the hospital but more importantly the staff of the ICU. There was absolutely no pressure at all and they allowed us to do what we wanted to do – shave him, wipe him over, get him dressed. Even to the point when we said “oh we’ll change his jocks” and Ally ran out of the room saying “I can’t do that I can’t do that” and I said “oh I’ll do it”. Even then one of the nurses helped me to roll him. I mean that is just so sensitive.

And look the really good thing about that, when we had finished our work we opened the blinds a bit because the sun had come up a bit by this stage and everything was calm. We thought yeah, if anyone came in now they would see the Roger that we know. All of the machines were gone at this point and it was just highly valuable. Not only in allowing us to do what we wanted to do but to complete our story here at the ICU.

I think the most amazing thing is when we both walked out of the hospital – and it was cold and the sun was up – we both felt content. Sad, but not sad for the wrong reason. We were completely calm with what had happened. Very thankful. We drove back to Ingrid’s house and we felt content with what we’d done and the fact that we were allowed to do it. So when you say what was the highest value to us – that hour, hour and a half was without a doubt probably the most precious time we had.